Savannah's infectious smile

Saturday, February 25, 2012

When your child turns 18, most people think about things like "hey, you're an adult now" and "have you registered to vote" and "why don't you get a job". But not us. That would be way too conventional. No, we get to think about something called a Conservatorship. If you're not familiar with this loaded little word, let me acquaint you.
A Conservatorship is the process where you either get to pay a Lawyer lots-o-money to draft exactly 56 legal documents for you (or if you don't have lots-o-money, you get to figure out how to fill out these documents yourself in a painstaking process that involves at least 5 pounds of weight gain due to stress eating). The purpose of these exactly 56 legal documents is to, without sugar-coating it at all, take away Savannah's rights and give them to someone of "normal" IQ (namely us, her parents, although the IQ thing might be debatable), in an effort to protect her from being taken advantage of by the slime balls of the world. The seven rights being taken from her include the right to sign a contact, to consent to marry, to choose her residence, to keep her private records private, to consent to sex (betcha didn't know that was a right that could be taken away from you, huh?) and stuff like that. If that doesn't say Happy 18th Birthday, you're an adult now, then I don't know what does!
So as you can imagine, having to file for Conservatorship is about as much fun as dental work and IRS audits. And all kidding aside, it represents just one more blow delivered to us by the scourge that is epilepsy. 'You're daughter lived to be 18, yay'. 'Now you get to take away her rights'. I feel like one of those inflatable punching bags they sell for kids that you punch and they pop back upright. Epilepsy throws the punches, and we pop back upright . . . eventually. Thank goodness we have Savannah in all of this or we'd be insane.
In the process of filing for Conservatorship, Savannah had to be served with the court paperwork in case she wanted to protest. So we had our good friend Nancy serve Savannah the paperwork. And in true, beautiful, loving Savannah form, she smiled, hugged Nancy, said thank you, never opened the letter at all, and proceeded to sleep with the letter being hugged tightly in her arms that night. So as always, I have this great memory of my sweet, sweet daughter that will always overshadow anything sad about the whole Conservatorship process. She keeps me smiling. Thanks Savannah. Now go get a job. :)

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About Me

I answer to lots of things but 'Mommy' is my favorite. Savannah's my daughter, my muse, and my sunshine. She teaches me everyday to smile, laugh, and love with total abandon. For her, for my family, and for the future Savannahs out there who will develop intractable epilepsy, I have dedicated my life to epilepsy research. We must find a cure. I love you Savannah.

Savannah's Story

As a toddler, Savannah was happy, silly, strong-willed, and full of love. She developed normal until the age of 2 years when she had her first seizure. She had a few seizures and then went 6 months without having any.But at age 3, the seizures came back and with a vengeance.To this day we have no idea why she started having seizures and nothing has worked to control them.

Savannah is now 18 and has had over 25,000 seizures.Epilepsy moved into our lives uninvited, unannounced, and continually attacks that which is most precious to us – our child.But we refuse to wallow.We’ve somehow managed to survive.Somehow I managed to finish school and get a PhD in Neurobiology.Combined with the PhD I’m pretty sure I have in Epilepsy, I somehow manage to do epilepsy research at a great University.We must find a cure for this horror.And we must hurry.

Today, Savannah is still happy, silly, strong-willed, and full of love.She smiles, despite her epilepsy, and teaches others to smile too.This blog is to remind us to never lose hope, never give up, and never let epilepsy take our smile.